Miracles...

Like beauty, are in the eye of the beholder.

We were privileged to be a part of the Starlight Children’s Foundation’s Great Escapes Program last night. It was a Christmas dinner cruise on the Sternwheeler, which we had been a part of last year. Thankfully, it wasn’t as crowded this year, but we did end up on the bottom floor where most of the families with children in wheelchairs have to sit. The upper deck was completely full by the time we climbed aboard.

We’ve been taking part in Starlight for over a year now and I often wonder why we continue. Not because it’s not a good organization, but because it takes effort on my part. It takes energy, planning, gas and time to participate, but I am NEVER disappointed. I ALWAYS come home with lifted spirits, yet surrounded by the sadness of the harshness of real life. Since Josh’s diagnosis, I’ve come to realize it’s IMPOSSIBLE to separate joy from sorrow.

As my husband, two daughters and Joshie got settled around the far back table, I wondered what the Lord had in store for us this year. Last year, I felt His love and spirit in a tangible way as I watched the families file out at the end of the trip each one hugging Terri and Yvonne, the leaders and planners of these events. My husband and I literally FELT God’s love as we watched the procession of physically broken children and their weary families leave with joy, laughter and happiness written on their faces. We both had stood side by side, marveling as our eyes filled with tears. And I wondered what would happen this year…

Then I saw them, the last family to arrive. There wasn’t really any place for them to sit. We quickly offered to shuffle ourselves around making room for their small wheelchair filled with a precious little girl, their mentally disabled high school aged son and themselves. Once they were settled, the mom and I began to talk, while the father listened. This was their first outing with Starlight and she commented on how hard it is for her to go anywhere with the wheelchair in tow. Full of gratitude for our willingness to make room, she quickly told me her son had been born at 24 weeks gestational age weighing one pound and had suffered many brain bleeds, thus his mental disability. Then she introduced us to her three year old granddaughter, who had also been born at 24 weeks and was unable to walk, talk or even swallow on her own due to brain bleeds! They had adopted her instead of letting her become a ward of the state. I was stunned.

My mind quickly went to my precious first born. Twenty-one years ago she was born by an emergency c-section at 25 weeks weighing only 1 and ½ pounds. But unlike these two children, she NEVER had one brain bleed. She had her share of complications and problems, but she left the NICU fairly whole. In fact, my oldest will soon be graduating from college and will be giving birth to her first child. There was a time when we wondered if she would ever even be able to conceive because of the multiple x-rays, scans, steroids and her prematurity. She definitely had mild physical consequences of her prematurity and sometimes suffered through being teased by her peers because of them. But she always had a healthy knowledge of who she was and where she had come from and what could have been. As an adult now, many people don’t know about her beginning. They don’t know they are looking at a miracle.

As I sat across the table talking with that mother, I knew that could have been me. I knew that was a road the Lord could have had me travel down, but for whatever reason, He didn’t.

Instead, I was given a beautiful miracle…

Coincidence...

A chance happening, an accident, fluke, or happenstance. But are there really such things as twists of fate? Or are there reasons for the why and how of things?

I believe in a reason and purpose, because I believe in the God of the Universe.

I wrote a blog last June about a very disappointing and tearful day for Josh and me. It was the day we were sure Josh’s trach tube was going to come out. We went to the hospital full of expectations and hope only to be disheartened by the failure of his trach removal. Finally, exhausted and spent, we began to drive home in the late afternoon each of us in the silence of our own sadness. Suddenly we noticed “The Jumper”. She was dressed in white painter pants and a button-up shirt, sporting a Mohawk. Anger etched her face as she fought the two officers trying to pull her down from the bridge railing. Her backpack sat on the ground beside her feet. This quick glimpse of desperation was gone in a flash as we drove by, propelling Josh and I into prayer for this stranger’s life, our own distress easily forgotten as we pondered the despair that would push someone to such a point.

Now fast forward to October. It was the month my husband and I spoke in our large church sharing our journey through childhood cancer with our son, Joshua. I had noticed them in the audience before, young street kids filling up an entire row of seats. The ministry is called Transitional Youth and a young couple drives downtown each Sunday morning picking up the homeless kids who want to go to church. I didn’t notice them in the crowd that day, after all the lights were bright and I was nervous. But the following Sunday, a young woman with a Mohawk came towards me after the service was over. She introduced herself and asked me to pray for her brother who had had cancer when he was a baby.

“The doctor’s think the cancer is back now” she said. I promised to pray for her brother. We talked a little longer and I asked her how I could pray for her too. After she shared, we parted.

A couple nights later deep in sleep I startled awake. "The Jumper" was the same mohawked girl I had met at church! Though I haven’t confirmed it, I’m almost 100 percent sure. I’ve seen her there every Sunday since. Sometimes we speak, sometimes we don’t. She’s touched my heart. A million questions have filled my mind: how did she end up on the streets, what’s her family like, how did she find Transitional Youth, what was happening when I drove by her that day?

Coincidence? Yeah…right…

"Transitional Youth provides outreach, support, and housing to positively transform the hearts and lives of homeless youth through compassion, guidance and the grace of God."

www.transitionalyouth.org

Moving out of the driver's seat...

I’m in the process of teaching my fourth and last daughter to drive. It’s sort of a sad/relieved/amazed kind of feeling as I sit in the passenger seat and encourage her as she maneuvers down the road. I clearly remember how scared I was to teach my oldest to drive. She just didn’t have that natural knack, but my husband and I were also inexperienced at teaching something we took for granted. After all, we had been driving for years and really didn’t think much about the “how to” of driving. How do we translate those skills into the young inexperienced brain of our child? It was painful for all of us, but she learned and so did we.

Just as each of my four daughters is unique in their personality styles and abilities, some of them have been more gifted at learning to drive than others. I have to admit my youngest has been easiest to educate when it comes to driving. It’s part of being the “baby of the family”, I think. She’s watched her older sisters conquer the learning curve and experience the independence of going places on their own. She told me once she was born to drive! She began to talk about driving on her 14th birthday. She started studying her DMV booklet 6 months before her 15th birthday, and then counted down the days until she could take the permit test.

She’s so ready to grow up and yet…she isn’t. Because once she got her permit and began actually driving to and from art class, she looked over at me and said, “Mom, I don’t like driving.” She feels the stress, sees the craziness and seemingly random actions of other drivers and has suddenly realized what a HUGE responsibility it is to get behind the wheel of a car.

The sad part of teaching my last daughter to drive has shown itself in my heart as I’m reminded how I’m moving out of the driver’s seat of my girl’s lives. Slowly I’m slipping into the passenger seat and talking them through as they maneuver down the road of life into adulthood. It’s sort of bittersweet and it’s definitely scary. Sometimes I want to grab the wheel from them. Sometimes I find myself trying not to scream out with warning. Sometimes I’m pushing with my feet onto the invisible brakes on the passenger floorboard trying desperately to SLOW them down. My youngest has watched her older sisters leave home, make choices, seeing the serious side of life through them. She’s lived through a house fire and watched her little brother suffer through cancer treatments. She’s anxious to grow up and be on her own and yet, she hesitates as she watches how hard life can be for her sisters or when she discovers that driving really isn’t that fun after all. That’s fine, I think to myself. Take your time.

My oldest will be giving birth to her first child soon. My first born is becoming a mother. She’s in the driver’s seat of her life along with her husband and her God. I’m a passenger now, there to encourage, there to give advice when asked. It’s sort of the same feeling I had when I began to teach her to drive. It feels scary and I feel inadequate. It’s a big responsibility, this thing called life. How do I teach her what I’ve been doing for years? Giving birth, raising babies, discipline, nurturing, paying the bills, loving my husband? How do I impart what I know to this young mother? I want desperately to take control, telling her how to take each turn, when to brake, and how to anticipate danger, but I know that time is past. I’m in the passenger seat now.

My second daughter is almost completely in the driver’s seat. My third is making her way into the driver’s seat and my fourth daughter is just beginning to move over to the driver’s seat. There’s no hurry. I’ll cherish the time.

I’ll be in the passenger seat soon enough...

Just say NO to crack...

It’s tough being a mom of daughters. I walk a tight rope of laying down the law or covering my babies with my smooches of love. On one hand I gaze at them and marvel at how they’ve grown, how mature they’ve become, how beautiful they are. On the other hand I see the young, firm bodies that can draw a man’s eye in a flash.

That’s why I say NO to crack. That’s right, I’ve been known to make them squat down right there in the fitting room of our favorite department store just to check for CRACK. You know what I mean, the crack of the fanny that seems to peak out from the back of those low cut jeans. Or it’s the crack in the chest area exposed because of the low cut scoop necked top. Who makes these clothes anyway?

Hey, I’m all for fashion. I’ve been known to wear really uncomfortable shoes just because they are “in”. I love looking at the latest styles, thumbing through those magazines that come in the mail from my favorite stores. I always look forward to dressing up, but for goodness sake, what’s with the jeans that have about 5 inches of depth from the crotch to the “waist” band? And what about those tops that allow the girls to literally BUST out?

If I see even a hint of crack, I refuse to buy the jeans or the top. I’ve been known to go on “crack” patrol just before the girls walk out the door to school. Oh, the sighs and moans I hear when I make them change. One of my girls in particular is very inspired by fashion. She has her own colorful, fun and funky look. So to make her change out of the carefully constructed outfit for the day seems to bring her pain. I’m pretty tough, though. No matter how painful it is or how much it ruins the outfit to change, I make her do it. These mother’s ears are deaf to that type of complaining.

One day they’ll thank me.

Just say NO to crack…

Another bit of damage done...

We just discovered my son’s vocal chords have also been damaged by the radiation he received almost 4 years ago. They don’t open into a wide “V” as they should, which is why he sounds like a loud Kazoo while breathing at night. We just removed his trach tube and were hoping we could sew up the trach hole, but with the injured chords, we first need to find out if he’s getting enough oxygen and REM sleep at night.

This new revelation threw me into an angry tizzy. You’d think by now I could weather the storm better. But the anger and loss seem to keep mounting. I was angry at the doctor for not listening to me. I was angry at the oncologist for patronizing me. I was angry at my husband for agreeing with them. For my husband’s sake, I realize it was his optimistic nature kicking into overdrive hoping above all hopes that everything was fine. I forgive him. I forgive the doctors. Life goes on.

I read parts of a book today titled Childhood Cancer Survivors: A Practical Guide to Your Future. As I read the section on emotions, I was validated in many ways especially in the sections on anger and grief and loss. As I said, the losses seem to keep piling up and the anger seems to suddenly consume me.

Quote: “It is now known, however, that survivors and their families often face many physical and psychological challenges after cure.”

Yes, we have been dealing with serious physical complications due to treatment since we began the cancer fight. And we aren't even considered "cured" yet!

Quote: “You will probably experience a range of strong emotions as you adjust to your after-cancer life; these can include fear of recurrence, anxiety, guilt, anger and grief as well as gratitude and joy.”

Anger and grief, I seem to be stuck there.

Quote: “These perfectly normal feelings are sometimes viewed by others as a problem when they are actually a natural response to a life-changing event. It is important and necessary to acknowledge these feelings in order to deal with what cannot be changed.”

Interestingly, the “physical and psychological challenges” can be present for the rest of the survivor’s and family’s life!

Then I read my devotional this morning by Oswald Chambers focusing on “Faith as small as a mustard seed…” Matthew 17:20. Chambers writes “We have the idea that God rewards us for our faith, it may be so in the initial stages; but we do not earn anything by faith, faith brings us into right relationship with God and gives God His opportunity. God has frequently to knock the bottom board out of your experience if you are a saint in order to get you into contact with Himself. God wants you to understand that it is a life of faith, not a life of sentimental enjoyment of His blessings.”

He went on to write, “Faith by its very nature must be tried, and the real trial of faith is not that we find it difficult to trust God, but that God’s character has to be cleared in our own minds. Faith in the Bible is faith in God against everything that contradicts Him—I will remain true to God’s character whatever He may do.

So how do I join these two? What does “faith” have to do with “physical and psychological challenges”?

Everything…

As I struggle through the “strong emotions” of my life and my family’s lives being forever altered and changed, because of childhood cancer and as I find new “physical damage” done to my son, because of the treatment he received; I know God is at work in our lives. He is faithful, because of His character, which has proved itself to me over and over again, and I realize…

Another bit of healing made…